The Voice of the Patient

Allergic diseases, which constitute a global health problem, have been defined as one of the epidemics of the twenty-first century. Since there are no cures for allergic diseases today, the goal of treatment is to get the disease under control so that the patient can live a normal life with optimal chances of development. Patient-reported outcomes for control assessment have been a focus of attention since no laboratory test or physical examination can do this alone in a reliable manner. The aim of this thesis was to develop patient-reported outcomes (PRO) for clinical evaluation in regard to respiratory allergic disease. Two PROs were validated. The first questionnaire was a disease-specific, health- related quality of life questionnaire that had been developed in England for children with multiple allergic diseases. We translated the questionnaire into Swedish and validated it for children with a grass pollen allergy. The second instrument is a novel tool for asthma assessment in primary care developed with the goal of structuring asthma review in primary care. The result showed that it can be useful for assessing asthma control as well. The burden of allergic disease was assessed in children with a grass pollen allergy during pollen season. The result showed that the health-related quality of life was impaired and that the patients were affected both physically and mentally. We also propose new limits for pollen prognosis that would be easy for children to understand, in this case presented as a traffic light model with green, yellow and red lights. In conclusion, this thesis shows that respiratory allergies can affect the health-related quality of life. We believe, since the goal of our treatment is to improve the patient's daily life, that PRO measurements can be helpful both in research and in clinical practice

Adherence and quality of life in adults and children during 3-years of SLIT treatment with Grazax-a real life study

Respiratory allergic disease represents a global health problem, 30% of the population suffers from allergic rhinoconjunctivitis and 20% suffer from asthma. Allergy immunotherapy induce immunological tolerance and thereby modify the response to allergens and sublingual immunotherapy (SLIT) offers the possibility of home administration of allergen therapy, but adherence is more uncertain. The aim of the study was to investigate the adherence with GRAZAX in adults and children ≥ 5 years during three consecutive years of treatment. This was a non-interventional, prospective, observational, multi-center, open-label study to investigate adherence, quality of life, safety and tolerability of GRAZAX in adult and pediatric patients in a real-life setting. During the 3-years study period estimation of adherence was done regularly. Quality of life as well as symptom score was also assessed. In total, 399 patients (236 adults and 163 children) were included in the study. At baseline, 100% suffered from moderate-severe eyes and nose symptoms, and 31% had asthma in the grass pollen season. Overall, 55% completed a 3-years treatment period, whereas 37% stopped before end of study and 8% were lost to follow up. After 3 years, the adherence rate decreased from 98.2% (first month), 93.7% (first year), 93.2% (second year) and 88.9% (third year) and adverse events were the main reason for pre-term termination. The study suggests a good adherence to treatment in a real life setting among the patients finalizing 3-years SLIT therapy. The treatment was effective both on symptoms and HRQL

Swedish Translation and Validation of the Pediatric Allergic Disease Quality of Life Questionnaire (PADQLQ).

Aim: The aim of the study was to translate and validate the PADQLQ (Pediatric allergic disease quality of life questionnaire), a disease specific quality of life questionnaire for the assessment of quality of life in children with pollen allergy. Methods: The PADQLQ was translated into Swedish according to guidelines. Children 7-18 years with grass pollen allergy were included. Quality of life was assessed in parallel with ordinary symptom scales (VAS) before, during and after the pollen season. Results: 98 children were included. 89 (91%) completed the study. The Results for PADQLQ showed good cross-sectional and longitudinal validity. The retrospective estimation after the season showed good consensus with the assessment during pollen season. Conclusion: Quality of life in children assessed with the PADQLQ (Pediatric allergic disease quality of life questionnaire), is a reliable strategy for evaluating the burden of disease in children with pollen allergy and for the evaluation of treatment

ALMA, a new tool for the management of asthma patients in clinical practice: development, validation and initial clinical findings.

BACKGROUND: Several instruments have been developed for measuring asthma control, but there is still a need to provide a structure for primary care asthma reviews. AIMS: The Active Life with Asthma (ALMA) tool was developed with the aim of structuring patient visits and assessing asthma treatment in primary care. The ability of ALMA to map out the care of asthma patients was evaluated and validated. METHODS: ALMA was developed with patient and clinical expert input. Questions were generated in focus groups and the resulting tool was subsequently validated by factor analysis in 1779 patients (1116 females) of mean age 51 years (range 18-89) in primary care. RESULTS: The ALMA tool includes 19 questions, 14 of which belong to a subset assessing asthma control. In this subset, factor analysis revealed three domains (factors): physical, psychological, and environmental triggers. Correlation with the Asthma Control Questionnaire was 0.72 and the Cronbach's alpha was 0.88. The test-retest reliability was 0.93. Of the 1779 patients tested with ALMA in primary care, 62% reported chest tightness, 30% nightly awakenings and 45% asthma breakthrough despite medication. CONCLUSIONS: The ALMA tool is useful as a follow-up instrument in clinical practice to structure patient visits and assess asthma treatment in primary care. The breadth of the questions and the pragmatic use in clinical practice also make it useful as an outcome measure

Många överbehandlas med astmamedicin

Swedish asthma guidelines recommend treating asthma with the lowest effective dose possible. These recommendations are both hard to follow and seldom considered enough in asthma care today. As an example, combination therapy with inhaled corticosteroids (ICS) and long acting beta agonists (LABA) should only be considered if asthma control is not achieved with low to medium dose ICS daily. However, the Swedish National Board of Health and Welfare estimates that 120 000 asthma patients are overmedicated with combination therapy. Guidelines are clear in instructions of when and how to step up asthma treatment, while instructions for stepping down are not that obvious. In this article, we present an asthma treatment algorithm for step 1-3 in adults for use in clinical practice (Fig. 1), where stepping down asthma treatment is considered as an alternative. Included are also instructions of how to step down asthma treatment (Fig. 2). We conclude that stepping down is possible to do in a safe way in certain patient groups while maintaining asthma control. If possible risks are taken into consideration, stepping down asthma treatment can be done in every clinical setting

ALMA, a new tool for the management of asthma patients in clinical practice: development, validation and initial clinical findings.

BACKGROUND: Several instruments have been developed for measuring asthma control, but there is still a need to provide a structure for primary care asthma reviews. AIMS: The Active Life with Asthma (ALMA) tool was developed with the aim of structuring patient visits and assessing asthma treatment in primary care. The ability of ALMA to map out the care of asthma patients was evaluated and validated. METHODS: ALMA was developed with patient and clinical expert input. Questions were generated in focus groups and the resulting tool was subsequently validated by factor analysis in 1779 patients (1116 females) of mean age 51 years (range 18-89) in primary care. RESULTS: The ALMA tool includes 19 questions, 14 of which belong to a subset assessing asthma control. In this subset, factor analysis revealed three domains (factors): physical, psychological, and environmental triggers. Correlation with the Asthma Control Questionnaire was 0.72 and the Cronbach's alpha was 0.88. The test-retest reliability was 0.93. Of the 1779 patients tested with ALMA in primary care, 62% reported chest tightness, 30% nightly awakenings and 45% asthma breakthrough despite medication. CONCLUSIONS: The ALMA tool is useful as a follow-up instrument in clinical practice to structure patient visits and assess asthma treatment in primary care. The breadth of the questions and the pragmatic use in clinical practice also make it useful as an outcome measure

Quality of life in children and adolescents with respiratory allergy, assessed with a generic and disease specific instrument.

Introduction: Respiratory allergic disorders like rhinitis and asthma are common conditions that not only affect target organs, but complicate the daily life of affected children and adolescents. Objectives: The aim of this study was to investigate the QoL (Quality of Life) in children with grass pollen allergy in and out of grass pollen season. Methods: We used the Pediatric Allergic Disease Quality of Life Questionnaire (PADQLQ), a disease specific questionnaire including both asthma and rhinitis symptoms. We also used the DISABKIDS questionnaire, a generic questionnaire covering non-organ specific effects of disease. Results: 98 children 7-18 years old with grass pollen allergy were included. 89 children (91%) completed the study. The QoL was significantly decreased during pollen season assessed both with DISABKIDS and PADQLQ. The correlation between the questionnaires was 0.73. Not only the physical domain score (p=0.00093) but also the emotional domain score (p=0.034) was significantly lowered. Children with multiple manifestations (asthma and rhinitis) had lower QoL than children with rhinitis alone (p= 0.01). Multiple regression analysis showed a highly significant impact on QoL for symptoms from nose, eyes and lungs. They were equally important (standardized coefficient 047, 0.47 and 0.46 respectively). Conclusion: The quality of life in children and adolescents with respiratory allergy deteriorates during pollen season. This was shown both with generic (DISABKIDS) and disease specific instrument (PADQLQ). © 2012 Blackwell Publishing Ltd

The Southern Sweden Adolescent Allergy-Cohort : Prevalence of allergic diseases and cross-sectional associations with individual and social factors

Objectives: Asthma and allergic diseases are the most frequent chronic diseases in childhood worldwide, and considered a burden for the affected children and their families. The diseases impose an economic burden on society if not diagnosed and treated properly and management of and these diseases are challenging for healthcare professionals. The aim of the present investigation was to assess the prevalence of allergic diseases in an unselected cohort of adolescents in southern Sweden. Additionally, associations with sociodemographic factors were investigated, as well as impact on daily life. Methods: This cross-sectional study was based on a cohort of n = 1 530 school children, aged 13 to 14, from 13 municipalities in southern Sweden. Data were collected through web-based questionnaires. Results: Of all children 32% reported at least one allergic disease. 67% reported one allergic disease and 33% reported more than one. No allergy-related disease were reported by 68%. Current asthma was reported by 9.8% and current rhino-conjunctivitis was reported by 13%. The prevalence of food hypersensitivity was 12% and the prevalence of eczema was 11%. One to three wheezing attacks were reported from 55% and 40% reported more than four attacks of wheezing in the preceding year. The self-reported allergic diseases were diagnosed by a doctor in; 36% (food hypersensitivity) to 69% (rhinoconjunctivitis) of the cases. Conclusions: A high number of affected children were identified. Some children being undiagnosed and some not receiving satisfactory treatment. These results suggest that additional studies to evaluate treatment procedures in order to improve healthcare for allergic children are warranted

Cognitive dysfunction and quality of life during pollen season in children with seasonal allergic rhinitis

Background: Allergic rhinitis often gives rise to impaired quality of life and is believed to also affect cognitive function. We aimed to examine whether cognitive functions were impaired during grass pollen season in symptomatic allergic children and to relate the degree of impairment to quality of life and biomarkers related to stress and inflammation. Methods: Forty-three grass pollen-allergic children (age 8-17 years) with non-satisfactory effect of medication (antihistamines and nasal steroids daily) during previous seasons were included. In addition, 26 matched non-allergic children were included as controls. Both groups performed cognitive tests (CANTAB) and completed Quality of Life questionnaires outside and during the pollen season. Blood samples were collected and analyzed for stress and inflammatory biomarkers. Pollen level was measured daily. Results: Impaired cognitive function was found in spatial working memory, where the allergic group made more errors compared to the non-allergic group during pollen season, but not off-season. No significant differences could be seen between the allergic group and the controls in the other tests investigating visual memory or attention. Quality of health questionnaires revealed more symptoms and impaired quality of life in allergic compared to non-allergic children, and increased symptoms in allergic children were associated with longer reaction time for simple movement during pollen season. No differences in stress or inflammatory biomarkers could be found between the groups. Conclusion: Cognitive function was affected during pollen season in pollen-allergic children, and the more symptoms the allergic children had, the longer the reaction time in the cognitive tests